Sunday, March 10, 2013

I saw Dr. McCourt last week in New London and told her that I don't want to take the Taxol any more. She of course wants me to take it on a reduced, more spread out schedule and wants me to take a couple of weeks off and come back to talk about it.

I will go see her the week after next and I will be telling her that I am stopping chemo. All the chemo is doing is helping me "maintain"...we all agree that it is NOT going to cure me. Her idea of continuing the chemo means that I go twice a month and endure all the side effects just to "maintain."

I'm not going to do that. I'm pulling the plug on chemo, will turn myself over to Sandy and my friends who recommend juicing and homeopathic supplements. At least the supplements won't give me side effects. As I think back on all that modern medicine did to "help" me during my last hospitalization, I realize that most of if ended up doing more harm than good. The tubes, the artificial feeding, the bags of fluids. I'm still paying the price for some of that three months later. It didn't make me stronger, it weakened me and left me almost helpless to fight back.

Let me be able to feel my feet again, to get rid of the horrible taste in my mouth that affects my eating, lose the fluid that has filled my legs, abdomen and back that makes it so hard for me to walk, get up out of chairs, etc. Let me stop feeling so exhausted so I can go out and enjoy somethings in life.

I know I may not be able to eat solid foods again because of the strictures in my guts, but maybe I can at least enjoy the liquid nutrition I'm getting.

I would rather face the cancer without all the foolishness I get from the chemo. And if it means that I don't last as long as I would if I took the chemo and "maintained," well, then so be it.

Dying isn't the worse thing. Living the way I have been living lately has been pretty tough and I don't see it getting any better by me putting more toxic drugs in my system. What is the point?

So, I hope that everyday it gets a little easier to move, I feel more like a human being and I'm able to get some enjoyment from my surroundings. It's been hard to do that lately and I'm missing it.

I know a lot of folks think I'm "brave" and want me to hang in there for whatever reason. I think it's important that we understand and accept when it's time to let go. I'm looking into Hospice of SE CT and won't hesitate to call them when I need their services. I know the wonderful things they do and I'm not going to be one of those who waits until two weeks before I die to get them involved. That must be the social worker in me.

I know it's been hard for members of my family and some of my friends to think about this stuff, and that has kept some of them away. I wish it weren't like that, but I understand how they feel. This whole experience has really been an eye-opener for me....I have been forced to think about so many things....and I have definitely benefited from all of it.

I feel good having made this decision. It's time. I feel a big load off my shoulders. Looking forward to Spring.

Friday, January 25, 2013

Yesterday Pam Child picked me up early (she had to start earlier...she lives in Brooklyn) and we toodled off through the freezing temps to Providence...arriving REALLY early. Good thing...Little Ann Marie was there and she took us in early!

After some brief concern about my bloodwork, Anne Marie left us while she went to get stuff ready for my chemo. That's when I heard THE BIG NEWS! Sandra (my usual chemo nurse) came in with a big shit eating grin on her face. She stood in the middle of the room and whispered something to me...I didn't get it so she leaned in and whispered in my ear: "June is gone, we are very happy and we owe it in large part to YOU!"

I said, "now I just have to work on the next one." She asked who and when I said "Grace" she said, "but Grace is a nice person, the other one wasn't." I believe her on both counts.

I was the HERO! Oh, the other nurses would come by the room, look in and give me a big grin. The tech actually said as she informed that yesterday was her last day, "I'm leaving just as its getting good around this place!' Oh, I basked in the glory.

I may sit down with Grace someday and explain my concerns and expectations of her. I need her to understand what I want to do with my life going forward to whatever conclusion there is about this cancer. I don't intend to all medical people to be intrusive, to subject me to things that are degrading, disgusting and dehumanizing.

Speaking of that I met the head nutritionist yesterday. She came down to see me and expressed her concern about my weight...I weighed 136. I told her how eating is a chore, it exhausts me, things don't taste good unless they are spicy or citrusy...which burns the sores in my mouth. It's a battle to eat. We had a long chat...she listened a lot and asked a lot of questions. I told her that I wanted to put them all on notice that I will NEVER agree to a Gtube for feeding. I loved her answer, "then our job is to figure out what some way else to help you.' GOOD ANSWER! In our conversation I learned that she views herself as an advocate for the patients first and foremost. GREAT! I encouraged her to keep up the fight.

We also discussed how hard it is at times for me to drinking enough fluids and I inquired about getting bags of Ringers for home infusion, PRN...especially when I am having the constant diarrhea. I lose far more fluid than I take in. So, she made it happen...they delivered the bags and a more very own IV pole yesterday!

Because we started early and every thing went smoothly we were out in record time: 11:11. YAY! I had Pam stop at Wendy's because I had a craving for chili. I got a small chili and I ate the WHOLE DAMNED thing! Can't believe it! Came home and crawled into bed and couldn't sleep...dozed for awhile and fantasized about supper.

Sandy cooked up a small hamburg patty for me and added a small portion of sweet potato. I ate the whole thing! Then I had a small portion of the mac and chicken mushroom dish Jean and Sandy were having. I was hungry and it tasted pretty good!

While we watched TV Sandy hooked me up to the IV and I got half a bag of fluid. Good thing because the explosive diarrhea (sorry folks) returned after giving me a two day hiatus and I spent most of the night in the bathroom.

This morning I weighed 140!!! Our scales are very accurate, so I guess that chili and supper worked. I came downstairs and made myself some french toast and a slice of turkey bacon. I used a slice of Lazizah's italian bread for the toast and I was able to eat all but the crust. And I ate the entire slice of bacon.

I know that it's the steroids that are making this possible. I wish I could get steriods everyday! But that has it's own problems....so I try to make hay while the sun shines. So today I will eat as much as I can and tomorrow I will lie in bed feeling wooden and unresponsive. That's the nature of the beast. Hopefully that will not always be the way it is.

My Dad moved in to Westview last Tuesday and is adjusting. He still tries to self-transfer....go from bed or chair to his walker, but they catch him and they say he redirects easily. I'm glad there are able bodied folks all around him to keep him safe when transferring and moving around. I was so scared that he would fall while Wini was helping him and both of them end up hurt.

They also said that yesterday he was walking up and down the hall, calling for Wini. That hurts my heart to hear, her name is the only name he seems to know. I know that when I stayed with him last year when Wini went to Florida, he remembered who she was for about three days, after that he didn't recognize her voice on the phone, but he would call me "Wini." I don't know if Wini has been there to visit, she was going to take a few days off to rest up and get a break.

I think she will benefit greatly from not having to be responsible for him. She has been losing patience more and more with him and a friend of Phil's who works at Stop and Shop told Phil that last week she was yelling at Bob in the store. That's not good for either one of them. Yes, she needs a break.

I hope that next week, when I have my week off from chemo I will be able to get up there and see him. I want to see his room, meet his roommate and watch the staff interact with him. I am encouraged to hear that when he is calling for Wini, he is roaming the hall, which means he is getting up and out of his room. I just know that he is enjoying the good meals up there....Wini isn't much of a cook, nor does she have much of an imagination when it comes to meals. He loved it when I was there and made him omelets, bacon, etc. He's 92, he loves to eat....let him have tasty food! Dr. Botta agrees. I love Dr. Botta!

So, I will get Sandy or Jean to drive me up to the hinterlands and see my Dad....for the first time since last March. WOW!

Oh, I realized this AM that a year ago last year, we were either en route or had already arrived in Costa Rica. How I wish I was back there! Nice and warm, beautiful place.

It is so cold here we have slept with the window closed for the past three nights. I still get pretty cold at night, especially with the multiple trips to the bathroom...the mattress warmer stays at 60% all night and I wrap my bathrobe around my head, pulling it down over my eyes...I lie there and listen to "wind and rain" on my iPhone sound machine app and pretend I'm camping or I'm back in the National Guard, sleeping under my truck in Germany (as I once did for three days...it was drier than my pup tent)...just a little breathing hole in my head wrap. It sends me right off to Dreamland.

Okay, I've rambled on....stay warm and get ready to sunbathe next week when we have the Jan Thaw!

Monday, January 21, 2013

Well...I have another infusion of chemo under my belt, thanks to Charmine, who came to give me a ride, even though it meant getting up at an Ungodly hour for her! THANKS CHARMINE!!

While I was there I met with the RN supervisor and let her know I did NOT want to ever have to deal with the Chief Nincompoop RN that I had last time, Grace. She said, "not a problem" and told me it would be noted right on the cover of my chart...I thought that meant she was going to write "No Grace" on my chart....no, she wrote "Doctor Only" on it! That means I don't get to see any of my favorite Nurse Practitioners! Oh well, they obviously don't know how to hold anyone accountable up there. The supervisor wasn't surprised when I said Grace's name...obviously I'm not the first person to make that request.

Also while I was there I found out that my urine test came back positive for a UTI. They got a prescription phoned in for me...this was a week after the test was done! Also, this is the fourth time I have been through antibiotic treatment for a UTI since early November! What the hell?

So, Friday night I'm sitting there and my cell phone rings. GUESS WHO? You guessed it....GRACE! She asked me if I remembered who she was and I had to restrain myself from saying, "DUH!" She was calling to tell me that I had a UTI. I told her I knew that already and and that I have a prescription for it. She practically shouted "WHO WROTE THAT?" I told her who. She said, "well I was just going through my labs and saw this." I told her "I'm all set" and hung up on her. Hanging on up on her was kinder than I would be if I had stayed on the line, I was gearing up to blast her.

So, she doesn't check her labs for a week. I wonder how many people had serious things and had to wait that long for her? Oh, and if she HAD called in a RX for me, she'd probably screw it up...she made two mistakes in the RX she called in for the "Magic Mouthwash," including the directions to "swallow and spit!" It should be "Swish and spit" The woman is incompetent.

Saturday I got good news....my Dad is being admitted to Westview on Tuesday. It's been a long haul, but it's finally going to happen. Maybe I shouldn't say that, Wini could always balk at the last minute, come up with some excuse. He will be sharing a room with a man who is described as gregarious and desperate for someone to talk with. That would be my Dad! The staff at Westview are excited about him moving in, they know him so well from his care of my Nana when she was there, then Loretta when she was there and then all the talks and slide shows he used to put on for the patients and staff about the history of Putnam and other topics.

I feel relieved to have him there. I know he will be well-fed, kept clean, can ambulate safely and will benefit from being around groups of people, especially people who know and love him. His ambulation has become more and more problematic and I have been worried about him getting around with only Wini's help.

A selfish reason for wanting him there is that I won't have to see Wini when I go see him. That has kept me away from him since last April and it has worn on my heart. I cannot be around her as she drives me crazy. It is a flaw in me that I can't be more understanding and patient with her, but her procrastination behavior with everything I tried to do just pushed all my buttons. I am a person of action, you give me a job to do and I want to get it done. She would give me a job and then thwart me at every turn. She always had an excuse for why it couldn't be done that day. That's why it took me so long to clean out my father's bedroom and make it safe for him to move around.

This week I hope to have my bloodwork come back as good for me to get my third week of chemo. My old pal, Pam Childs has the driving duty this week. I figured that I will really be wiped out this week and might actually need someone to carry me into the house. Pam would be that person!

Sandy installed grab bars on the door frame from the garage to the house. The second stair has a high rise and it was getting harder and harder for me to get over it. Now I grab onto the bars and use it to assist me into the house. Yes, I am that weak.

I can't believe how weak and tired I am. I thought I was weak and tired the last time I was on Taxel, that was nothing compared to this. I make myself get out of bed, come downstairs around 9 am, walk around getting something for breakfast--usually a protein shake. I have to sit down a couple of times during this process. I try to walk around the living room, dining room and kitchen a couple of laps. I stay downstairs in the recliner until around 11:30, then drag myself back up the stairs...and I mean drag. I come back down around 1:30-2:00, stay up until around 3-3:30 then back up again until Sandy comes home. Then I come down for a couple of hours and drag myself back up to bed.

The day after treatment I feel really good, probably from the steroid they give me before I get the chemo. Last Friday I told Jean I wanted to go to Lazizah. She took me down there and I picked up my "to go" order, we said a quick hi to Iffat and Bassem and then back home. That tired me out so that I felt physically ill on the ride home...but I was so happy I made that trip!

NOTE: if you have a weak stomach, don't read this next paragraph. This is for the nurses out there who are reading this blog...I have a question. They removed the G tube about 10 days ago. I had some drainage and then the hole in my side where it was started healing up. This weekend I de-hissed slightly and started leaking fluid from my side. It has become obvious that this fluid is fecal matter. How does that happen? Sandy has researched and has asked her fellow nurses about this and they are all confused. Anyone out there have any thoughts on this? It's not a large amount of fluid, but it sure can stink. It perfectly matches the liquid diarrhea that is coming out the other end. Sandy suspects that they created a stoma in there that now has to heal up and in the meantime this is what is going to happen. We asked the doctor to tell us exactly what they did and have yet to get a clear answer.

Oh, and I will actually fart out my side hole too! Strangest sensation.

Now I have to go watch the Huskies play Duke. Let's hope the outcome is better than that stinky Patriots game yesterday. I am so happy for sports, which divert my attention from feeling sick for a few hours...it's even better when my favorite team wins.

Thank you President Obama for including gay people in the fight for civil rights. First President to have the guts to do so, let alone acknowledge us! I know Bill Clinton was supportive, but he didn't push enough and came up with that odious "Don't Ask, Don't Tell" policy.

Friday, January 11, 2013

Another day with a nincompoop at the Oncology Center on Thursday. I had a 1:15 appt to see the Dr., which I wasn't pleased about because that meant I would get my chemo later. Who was the nurse that I had to go through first before I could see the doctor? FRIGGIN' GRACE!!

Some background of my history with Grace. First time I met her, she walked into my hospital room, pulled the curtain and stuck her stethoscope down the front of my gown. I said to her, "and who are you?" I couldn't believe it, she didn't say a word to me, just launched into a physical exam! No introduction, "I'm Grace and I'm here to do a brief exam....NOTHING!" And she did a poor job on the exam. She always listens to my breath sounds through my shirt, and she does the exam too fast, there is no way she is actually listening to my lung sounds!

Second time I "met' her: I'm in the hospital, getting my chemo and it's my last treatment, after this one I'm done! It's the Friday of Memorial Day weekend, a couple years back. She comes in and starts insisting that I have to return to the hospital on Sunday to get a Neulasta shot. Mind you, I had gone through six rounds of chemo without ever getting OR WANTING a Neulasta shot. It' is supposed to help boost your immune system and it also can cause severe bone pain. Sandy and I had decided that I would allow my own immune system to deal with the chemo, thank you very much. This Grace woman kept haranguing me about getting the shot, it was awful. I didn't know what to make of it. The nurse who was my one to one that day would tell me when Grace left the room, "you know, you do what you want." Finally I told Grace, go ahead and set it up for me, just to get her off my back. We had already decided there was no way we were going back to Providence on the holiday weekend for a shot we don't believe in.

The third time I see Grace was when I had my recent allergic reaction to the Doxyel. She was the nurse in charge of responding to the emergency. When I saw her I thought for sure I was going to die! All she did was do another poor job of not listening to my lungs, which you would think would be a critical exam for someone who was just struggling to breathe! Then she held my hand and comforted me....made my skin crawl.

So, I get her again on Thursday and she wants to argue with us about our decision to have the G tube removed. I don't care how many times we explained that the tube wasn't doing it's job, that it was causing me pain, that we were constantly fighting off infection at the tube site, etc. etc., she would say, "I hear what you are saying, BUT...." and she wouldn't stop. And she kept talking to Sandy and not to me. At one point she even said to Sandy, "you are going to have chemo today and that will help" and Sandy almost yelled, "I'M NOT HAVING CHEMO, SHE IS!" Sandy kept telling her to talk to me. It was wearing me out, I could feel my energy being sucked right out of me. When she finally said, "how about if they take it out and put in a tube that DOES work?" I thought I would lose my mind!

At one point during her harangue Sandy stood up abruptly. I looked at her face and I thought for a second that she was going to hit Grace, or walk out of the room to find someone who is sane. Instead she put my iPhone in my coat. Grace didn't pick up that we were upset with her. I have not seen that look on Sandy's face for a long time...it's the look she gets if she thinks someone is trying to hurt the dogs. Scary!

Then she did her usual shitty physical exam...she listened to my heart in weird places, she rushed through the lung exam, but WORSE...she only listened to two sites on my abdomen! I'm there with bowel obstructions for crying out tears! Bowel sounds are critical! Then she goes through this whole question/answer thing as if it was my first time there....HELLO, I've been coming here since 2009!

Finally the doctor came in, dragging Grace with her. We once again explained our reasoning for having the drains removed. The doctor told Grace to set it up with Rhode Island Hospital as she wasn't comfortable removing it due to my unique anatomy (due to my gastric by-pass) Grace had the good sense SOMEHOW...to keep her big trap shut.

Grace had taken so damned long with her friggin' dog and pony show that I was late getting upstairs for chemo. Which means that they took someone ahead of me, which made me even later in getting started, which means that the steroid they give me was administered late, which means that it didn't wear off and I was awake all night, as a matter of fact it's Nightly News time and I still haven't really slept today either.

They set it up for me to go this morning to have the tubes out, because it was too late to have it done yesterday....thanks Grace! We went up and they took the tubes out, piece of cake. I felt better as soon as the balloon that anchors the tube was deflated in my little tiny stomach pouch. Sandy still can't believe that they put the tube in that little pouch..."no wonder you couldn't eat, it was full!"

As more and more stuff drained out of my abdomen on the way home and once I got home...Sandy had to change the bandaging three times in a couple of hours....I felt better and better. I left a message for the doctor letting her know that all my systems are functioning normally and I feel a thousand percent better. Tonight I ate a good sized bowl of Jean's hamburg soup for supper and now I'm enjoying some rainbow sherbet!

Doctors need to listen to patients. Dr. McCourt listens to me. I know she wanted me to leave the tube in, but I was iffy about having it put in right from the get-go. The NG tube didn't do anything to decompress my abdomen, why would the G tube be any different? I trust her though and was willing to try. Turns out it made matters worse, it didn't decompress my abdomen, it filled up my stomach pouch and it exposed me to the possibility of infection. Not good.

The other thing about allowing them to put the tube in...it's a slippery slope. I don't want to have my life prolonged with artificial things, tubes, mechanical devices. I saw in this last month of having that tube in me how degrading, depriving and onerous having just a G tube installed can be. I don't want my medical support people think that I am willing to endure anything to stay alive. Quality of life is critical to me...I don't want or need to live as long as my father....I don't mind going out earlier, as long I can have dignity and peace.

Grace will be dealt with. The nutritionist tells me that many people have the same complaint as I. I will be telling them to keep her the hell away from me. Another one who is incompetent and proves it over and over again. I haven't had one positive encounter with her.

On the other hand, Sandra my chemo nurse is a star! She is so competent, attentive and handles my requests with no muss or fuss. We got the dosage on my benadryl lowered at almost a moments notice yesterday, which meant that I wasn't all doped up during my treatment. Big improvement! I am so happy I have her..and she, Sandy and I are bonding and building a good working relationship.

Oh, and I wear a mask from the moment I enter the medical buildings. Yesterday there were two kids in the Oncology Waiting room, both had colds and were coughing and sneezing all over the place, wiping their noses on their coats and then touching everything around the room. The snack lady even let them put their hands in the snack box to pick a treat. I told her afterwards what they were doing and that she never should have let them do that. Sandy and I were cringing the whole time we were out there. And I only took off the mask when I was in the room with Grace....and she asked me in a sarcastic tone, "and WHY do you have this?" I told her "BECAUSE I"M PARANOID ABOUT PEOPLE'S GERMS!" That shut her up....about that anyway.

Anyway...that was my bizarre day yesterday. Today was wonderful and I'm so happy I don't have that stupid tube protruding from my side anymore. It's not natural...it's not right. I have complete empathy for anyone who has to live like that. I won't do it again.

Tuesday, January 1, 2013

Happy New Year! Finally "coming to" after my chemo last Thursday...I got behind the game in the nausea dept and have been trying to play catch-up ever since....that doesn't work. My sole resolution for this year is to make sure that I get anti-nausea meds before the chemo treatment! I can't take another post chemo spell like I just went through.

I am no nearer to eating solid foods than I was back in early November. Yesterday I tried Nutella on toast and that was a big mistake....so I learn my lesson, slow and steady wins the race.

I was able to stay up last night and watch the New Year come in, with Kathy Griffin and Anderson Cooper. I never used to stay up for New Year's....Sandy was usually working and it just didn't interest me...but ever since some genius put Anderson and Kathy together on the Big Night....I can't resist. Last night was solid gold, just as we have come to expect.

Jean continues to come up from Waterford on a daily basis to sit with me. Well, mostly she sits by herself as I'm still not up that many hours in a day. I come down stairs around 9am and last until noon or a bit beyond, then I'm back upstairs and in bed. I come down later for "dinner time" and to be with Sandy and back up around 7 when she hooks me up to my TPN. I'm getting around 1,000 calories a day from this nutrition, fortunately...as I can't always get the calories in the "old fashioned way." It's difficult to explain, but I just don't have the energy, or desire to eat....it is such an effort to eat! I know I should eat...but if Emeril himself was preparing my meal, I wouldn't be tempted. Well...that seems to be improving now though...now that the nausea is under control. Have to keep it under control.

I have to be able to wrangle the dogs by myself before Jean will leave. I feel so bad for her...it must be boring as hell to have to sit here day after day. I am working on getting my own protein shake in the AM, and getting my supplies up and down the stairs by myself. So far, so good. Next it will be getting the dogs in and out of the kennels, in case someone comes to visit, etc. I have the nurse coming once a week to do blood work and the guy comes to deliver my TPN "food." I have to be able to handle all that...it seems like it should be easy...but it's not. Working on it.

Been enjoying the Huskies whupping Stanford and the Pats
whupping the Fish...it was a great weekend for my teams...they provide a
great distraction from the nausea, pains and discomforts. I am so
happy I have sports in my life....and it's the teams that win....I can't
imagine how I'd feel if this was Red Sox season! HA HA!

I have a break from chemo this week. Next Thursday I see the doctor and then start the round of chemo again...I go for three weeks in a row than a week off. I'm hoping the CA 125 test shows that the cancer is responding to the treatment...then maybe I can get an idea of how long I'll have to do this. Of course, if I can manage the nausea, it will be that much easier to go through...

Looking forward to the Huskies winning the National Championship, perhaps the Pats winning the Super Bowl, trips in the RV, going to the "Russell Tussell" in August and so much more. It would be so nice if I didn't have to have chemo at the same time!

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About Me

I am retired, work part time as a "fake patient" for medical students; a sometime sports writer for spmsportspage.com; dog agility enthusiast; ovarian cancer fighter; UConn Husky, CT Sun, Red Sox and New England Patriots fan. I write about whatever the hell comes along the pike.